They closed Lily’s chest today. I can’t even begin to describe the relief that Mommy and I both felt while we were standing in the middle of this group of doctors and heard them say her fluid output was finally high enough for them to close. We just kept smiling for a good 10 minutes while we just quietly celebrated the fact that we had reached this first milestone.
The procedure itself was a success and done without any complications and her chest looks amazing – it just looks like a steri-strip is covering up a zipper. Her colour looks amazing – so pink and so much like a typical child. There’s no way to describe the difference, she just went from looking so pale, with tinges of blue when she got really upset to this bright complexion. It’s the most amazing thing I have ever seen.
The next step is to wean her off of the oxygen ventilator that is doing a lot of her breathing work for her right now. She still gets very agitated when she wakes up – very fidgety and her levels drop quite quickly. They were working on taking her off of the muscle relaxants and lowering her oxygen today and we didn’t have amazing results. The nurse had to give her a couple doses of Ativan to keep her calm (as opposed to sedated) and there was a lot of adjusting her oxygen levels, since they would drop quite low when she got agitated, but hopefully we’ll get on that track soon and the next step is moving her upstairs to the actual cardiac floor and into a step-down room (1 nurse for 2 kids, as opposed to 1 nurse per child). We’re working in baby steps, but since she actually is a baby, we’re pretty happy with that.